My agonising epilepsy story
Riddled with myths and misconceptions, this condition has seen survivors neglected, ignored and even killed; now they are speaking out to create awareness about it
For, Joy Silyvia Wanjiku, her condition is a colossal reminder of rejection from the people she loved and called family.
She was seven when her mother heard her convulsing in the bed while sleeping and rushed her to the hospital. What followed was treatment for malaria and speech therapy, a misdiagnosis that was corrected at Kenyatta National Hospital (KNH).
“It was not until when I was taken to KNH that I was diagnosed with epilepsy. I was terrified; I did not know what was going on or how my life would be affected. I remember breaking down when they told me this condition would be with me for the rest of my life,” recounts Wanjiku.
Wanjiku, who has been on drugs for 12 years now, narrates how she was perturbed when she learnt of her parent’s separation, particularly because she was the root cause. Her father had suggested to her mother on several occasions that they kill her, believing that she was cursed. She left him and soon after, the family ostracised the two of them. Feeling dejected, they moved out and lived isolated from immediate family members.
Wanjiku’s seizures have left her with permanent scars, monumental evidence of her struggle with the condition. “Epilepsy has exposed me to rejection, anxiety, scars and a glimpse of what death must be like. One minute you are here, but the next is blackness. I have been raped, had an episode where I fell into a river, and on the road where I badly hurt my head. A day without medication for me is a near-death experience, so my mother ensures I take the medicine, which are a bit costly for us,” says Wanjiku. Her medication costs about Sh4,000 per month, a hefty amount for her mother who makes a living from doing odd jobs.
Lesser people
She notes most people with epilepsy live in a society that deem them to be lesser people because they do not understand it. “It is easy to endure the scars caused by my condition than the society’s perception of people like me. The level of ignorance from the society is wanting, I know of people who think that I am bewitched,” says Wanjiku.
Wanjiku’s story is one of the many that underline the predicaments of people living with epilepsy in Kenya. They experience stigma, and myths surrounding the disorder make an already delicate situation hard. Most of them are unable to access the lifetime drugs they need for lack of money.
Dr Eddie Chengo, an epileptologist and assistant chairperson, National Epilepsy Coordination Committee, defines epilepsy as a serious and unpredictable chronic disease, sometimes lifelong, that affects the nervous system. “This disorder is one of the most common disabling neurological disorder affecting about one million people in the country. Unprovoked repetitive seizures, often leading to loss of consciousness, are common in persons with epilepsy. Sadly, the actual cause of the condition is not fully understood and it affects anyone irrespective of age,” he says.
Normal life
Epilepsy affects over 69 million people worldwide, and an estimated 500 million are affected indirectly as family members and friend.
According to Dr Chengo, 20 out of every 1,000 Kenyans suffer from the condition, with 80 per cent living in rural areas. Women are more prone to injuries and sexual abuse than men.
Dr Chengo explains the diagnosis of epilepsy is mainly through clinical history of the seizure events. However sometimes doctors may need to understand more about the disease to help them manage the patient better. Therefore, they conduct a test, known as the Electroencephalogram (EEG), to classify the epilepsy types and syndromes.
“Seventy to 80 per cent of people with epilepsy will be well-controlled with medication and live a normal life. There are so many types of epilepsies and syndromes, and patients will respond well to certain medicine while others exacerbated by the same medicine. That is why we advise people with epilepsy to have regular medical checkups within three and six months depending on how one is doing,” the doctor says.
Dr Chengo acknowledges lack of adequate and accessible healthcare and stigma are thwarting the management of the condition. “There are so many factors resulting into the gap of accessing medication. Some are long distances to health facilities, cultural beliefs and misconception about cause of epilepsy, lack of knowledge among healthcare providers, lack of drugs in our hospitals, cost of medication, lack of equipment which help in diagnosis, resulting into ‘patient fatigue’,” he states.
He adds there are only about 20 neurologists in Kenya, and while there are several epileptologists, it does not translate to quality healthcare given the prevalence of the disease.
Inspired by the need to raise awareness about the lack of proper health care, and to demystify enduring myths and misconceptions surrounding epilepsy, a group of over 40 residence of Kiambu county decided to create Kipewe Welfare Group.
“Epilepsy robs patients of normal life; that is why we need to debunk the myths and unveil the truth. Today, both children and adults with epilepsy can narrate tales of exclusion because of apprehension and fear in the society. Our aim is to highlight issues we face such as lack of proper policy, poor drug compliance and management because of low resources. We are creating awareness so that people can see beyond the myths and shed away the stigma that is associated with it,” says Naftali Ndung’u, chairman Kipewe Group.
Ndung’u, who is married to a woman with epilepsy, only found out about her condition when she was delivering their first-born child. His joy was short-lived because the wife slipped into a coma for two weeks and was later diagnosed with epilepsy. Since then it has been a nosedive for them: apart from losing friends and her place in the society, she lost the day care job that she was running after parents started removing their children from the day care.
Accessible care
“Frequent clinical visit made me comprehend the high number of epileptic patients, most of who are unable to access proper health care. Yet, in spite of its prevalence, not so many people know about it. People do crazy things because of lack of knowledge and desperation. I remember slaughtering a dog and eating it with my wife, believing it would cure her,” recalls Ndung’u.
He says lack of access to necessary medication is a risky affair and that a person with epilepsy who is not constantly under medication is one step away from death or disability.
“If we can access medicine, at least at a subsidised price, will go a long way to help patients. Handouts are just not enough, what we need is sustainable affirmative action because other than drugs, persons with epilepsy need to meet other basic needs; they need work and the medicine will only help them sustain their livelihood,” says Ndung’u.
For Dr Chengo, the gap can be solved through public awareness, improving access to expert care and information, improving quality across the healthcare spectrum and where possible shift comprehensive epilepsy care service to the community where most of the patients reside.
“Epilepsy can cause significant psychological distress to the patient and caregivers, the condition is responsible for prolonged hospital stays due to injuries sustained during seizures and sometimes responsible for preventable fatal outcomes due to seizures. The only way that will happen is if the stakeholders work together in ensuring holistic medication is accessible to all,” Dr Chengo concludes.
